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    Brettg35 posted:
    Hi everybody my name is Brett and while I don't have fibro myself the 2 most important women in my life suffer from it. Both my mother and my girlfriend were diagnosed after their chemo sessions. They beat cancer thank god but now have to deal with fibro. My mother is on medication which seems to help her but nothing seems to help my girlfriend. We've been dating for awhile now and she means the world to me but as winter approached she warned me that her fibro gets really severe and she's not the same person. I can't bare to see her like this so I was reaching out to this support group to first gain more knowledge on the disease and more importantly get your feedback on what I can do to help her through this. Thank you
    angelswife responded:
    Brett---it's so good to see you here, and willing to learn! I'm glad to meet you.

    Has your girlfriend ever had her Vitamin D levels checked? Your mom too...This is a biggie for most of us with Fibro---a lot of us have low levels and need to supplement. Low D can make the Fibro symptoms worse, especially that deep bone pain that a lot of us talk about. You have to ask specifically for the test, though, because it's not a standard one.

    I would suggest that you have both your mom and your girlfriend check out this group as well. We would be happy to have them as part of the FMily. There is a ton of good, usable information here, especially the Member Toolbox post on the Resources page. The links for Nutrition and Vitamins are also very good places to start. The more you learn yourself, the better you can help both women.

    The most challenging aspect of the Fibro is that it's unpredictable. I can feel good one day, and the next day hurt all over and not want to move. I keep a journal of my symptoms and what is going on in my life when they occur, and it helps me to see what my "triggers" are. Doing this gives me some control over this unpredictable condition.

    You will need to be patient and flexible. Treating Fibro is a trial and error process; and it takes 6-8 weeks before you know if something is actually working. I'm sure your girlfriend is feeling frustrated and upset at what is going on. Getting used to a chronic illness is not an easy thing.

    You will never be able to understand her pain because you don't have it; but you can be supportive. When she has days where she can't function, don't tell her to push through the pain. Pushing ourselves beyond our limits only makes the Fibro worse.

    Some things that help me are Icy Hot Patches, Thera-Heat Patches, a heated throw, an electric blanket, and a memory foam topper for the bed. If she has neck issues, she might want to try a memory foam cervical pillow too. I take 1,000mgs of Vitamin D daily, and I also use D-Ribose powder to help with the energy levels. I've found I do better on a high-protein diet too.

    This is just the tip of the iceburg, so to speak. There is always something new to learn about Fibro. You are welcome to stop by anytime you have a question. Let your girlfriend and your mom know they are welcome too. We would be glad to welcome them to the Fmily!
    Brettg35 replied to angelswife's response:
    Thank you so much. I will let them know its nice to know there are people out there I can talk to about this it really means a lot to me.
    booch007 responded:
    Brett have her join the would be so helpful for her to learn the tools we all use to help ourselves. EACH different from eachother, but we have learned to have a life.

    Under resources is the Members toolbox. It is under a link from Caprice our moderator.

    You are a great guy that YOU are reaching out to help your loved ones. Thank you for checkin gin . Good man! Nancy B
    Brettg35 replied to booch007's response:
    You guys are awesome so much love lol. Truth is my girlfriend and I are going through a tough time because her fibro is really bad when it's cold and she gets a little embarrassed because of it so my question has is it ever affected your relationships and what should I do to help?
    booch007 replied to Brettg35's response:
    Ohhhh I get it.

    It is tough, you need to be patient and sensitive to her. Touch can be painful in itself let alone a "ride".

    My DH (dear husband) and I found me on top is the best. As no overall skin contact for me was important. I also had control over movement....

    Maybe lubrication (extra) may be of benefit...pre medicating before we had relations also helped me....A warm shower to soften my muscles....and a warm bed waiting...

    IT can be done. Maybe not as often as you would wish, as that is from a brain point of view too. Who wants to play when they hurt. But we have all figured a bit out to make it happen.

    I am married 33 years, so there you go...

    Getting in the mood will be your challenge but premedicating, giving her control...and warming the muscles should be helpful tips.

    Good luck. (I hope your drive to be here was not only for you haveing more "fun" in life, I will be disappointed. This is a tough road to walk. You ahve no idea how painful this can be, when the meds are not right and the tune up not done.

    I considered leaving...yes killing myself, I am a nurse with alot of knowledge and I was overwhelmed by the pain I had and in the end I needed to get the meds right.....drink plenty of water to help the muscles and get my mind in the right place....

    Sex and intimacy is important as it makes you feel loved and complete and not alone. This is a very lonely disease, as no one understands it. Even the physician treating it. Pain is subjective and can be life altering for sure. I can get in a deep hole when I over do and flare.

    So, good luck and I hope things work out for the winter months with you too.....if you really love'll work it out. Communication is the strongest thread between two people. .

    Nancy B
    Brettg35 replied to booch007's response:
    In sorry you completely misunderstood lol it had nothing to do with us in that sense I meant emotionally how has it affected your relationships and is there any advice?
    Wolfsong452 replied to Brettg35's response:
    yes, what should you do? I'm still trying to figure that part out.

    maybe someone here will have some answers.
    foreversore replied to Brettg35's response:
    My Dh and I have been together for 6 years and we have both had our ups and downs health wise. Being understanding and supportive is #1. If you can, go to appointments with her. Listen to her doctor and don't be afraid to ask questions to help you understand things better. I too am a lot more stiff when it is cold or damp out and I often don't feel like leaving my house. Find fun but low key things the 2 of you can do at home like rent movies or play cards/games or if her exhaustion level is too high just take a nap together and enjoy the closeness. I like to snuggle with my DH because he is very warm and I am always cold. The heat coming from him (and my heated mattress pad) are very relaxing and help me sleep a little bit better. A nice warm electric blanket in addition to the heated mattress pad may help her feel less stiff when she wakes up.

    There are 2 other things I want you to read that maybe will help you understand all of this a little bettter.

    One is the Spoon Theory, it will tell you what living a day in our life is like :

    The other is a letter to "normals" again to give you another idea of life with FM

    My Dh has been at every one of my appointments, he has read all of the literature given to us by my rheumatologist and he has read the above articles. He tries very hard to be as supportive as possible which I am sure isn't always easy as he works long hours. He knows that I have to live day by day, that making plans for a future event is iffy as we may have to cancel at the last minute if I am having a flare day.

    On another note, many of us with FM also suffer from depression and/or anxiety. It would serve you well to read up on those subjects so you can identify signs and symptoms of these disorders. When my pain and anxiety are high I am extremely irritable and the smallest thing can set me off. My DH has learned to just walk away and wait for me to be calm and then we talk about my outburst. Other times the depression and chronic fatigue make it so difficult to pull yourself out of bed or even out of the house. This can often become worse in fall/winter because of SAD (seasonal Affective Disorder) which can be helped with a natural light lamp and/or antidepressants.

    just remember that there will be times that even the faintest touch will be painful for her, or that bright lights, loud noises and a lot of commotion will cause confusion and headaches (it does for me anyway) and she may be forgetful or seem distant due to fibro fog. She may be edgy because she is anxious about her pain level that day or what an upcoming event may do to her body the next day. Don't be upset if her home isn't as tidy as you like...she may be unable to do a thorough job of cleaning all at once without putting herself out of comission for a week.

    There are a lot of intricate little ins and outs to this illness and all of the other disorders/conditions that go along with it. Patience, understanding and education (yours and hers) are key. Having a good and healthy relationship IS possible if you are both willing to put in the effort. I may have forgotten to mention a few things here or there (thats fibro fog for ya) but I think its enough that you should get the gist of things. Definitely have your mom and GF sign up here. Its a good place to get information or just to vent when the need arises. She wont always want to complain to you for fear of sounding whiny or lazy. It's silly I know but sometimes we just don't want to always burden our loved ones with our illness and prefer to discuss it with like minded people. It doesn't mean your relationship isn't strong, it means that she wants to keep it that way.
    Sorry for rambling on
    booch007 replied to Brettg35's response:
    For me, in the sense when I am in pain,...leaving me alone and giving me space is what is best. He knows there is little he can do. I do ask him to put Sombra (like stop pain) on my back when it is in bad shape.....It gives us touch, he feels he is helping and in the end I settle in a bit better.

    We don't talk about the "dragon in the room" It is just there. DH I think thinks if I talk about it, it brings it forward more....well I kinda believe it too. He'll say "Bad day?" and I'll answer yup or no I am ok...

    We go from there. Often he cooks the dinner as a day at work takes all from me and we own a deli and catering business and he is right in front of food anyway! So I have a blessing there..
    Sometimes I have to find the strength no matter what because he is so busy.

    Having been together for so many years before this reared it's head...we really know eachother, so the things we do are in synch.

    Having one good talk and making a plan of how you can help, signals for the "bad day" etc might be of help.

    Sorrry about the misunderstanding.....I wish there was a delete button . Good luck with helping in this, you truly are special to reach out and touch the fmily for ideas on how to help.

    24* this morning so the winter is on here in NY.........NAncy B
    jroseland replied to booch007's response:
    The fact that you're here asking this question puts you ahead of many other parnters. One of the biggest problems that people post about here is a lack of understanding and help from their partners.

    My husband and I both have health issues that are difficult to have and difficult to be married to! In a way that's been a blessing because we have a deeper empathy for each other. He can't expect me to be 100% all the time because he isn't.

    I think it's important to be very open about the issues and that includes yours too. You have a right to feel bad and frustrated about her health issues. But it's good to keep all conversations calm and constructive.

    It sounds like she hasn't found a way to get some relief or a way to cope well. That can be a long process and very hard. But once she does, life will get easier.
    Brettg35 replied to jroseland's response:
    Thanks again for all the help
    Brettg35 responded:
    Well unfortunately we did not make it I'm not sure what happened but I'm going to continue to try and understand fibro in the off chance the next woman in my life may suffer from it as well. You guys are really great people and and truly opens my eyes to it thanks again.
    katmandulou replied to Brettg35's response:
    Sorry I didn't reply sooner, I was sick thru the holidays, and couldn't check in.
    I'm so sorry for your relationship. Can you stay 'friends' and still give her some support? You should encourage her to join our FMily here, she will find a lots of people who go through the same thing every day.
    Brettg35 replied to katmandulou's response:
    The reason I joined was because we were talking marriage and having a family. I wanted to find out what I was in store for but regardless of how tough the road ahead would have been I was ready I truly loved and supported her but she did not feel the same way she doubted me.

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